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A Note Before Parting


The Minyanville community has been exceptionally supportive as Megan and I have struggled with my son Jackson's mystery illness over the last 18 months. It has been invaluable support, so we wanted to update you all on the current situation.

About 7 weeks ago, we consulted with an infection specialist that we had tracked down in Birmingham, Alabama, Dr. Orion Truss, who specializes in diagnosing and treating fungal (candida albicans) infections in the digestive tract. After reviewing the case and speaking with us about Jackson's worsening condition over the last 18 months, Dr Truss then suggested we start an experimental course of an anti-fungal medicine called Nystatin.

We did.

It's working.

Perversely, Jackson's symptoms initially got worse. This was actually a great response, since Dr Truss suggested that would happen if Jackson actually had a fungal infection in his digestive system. But ever so slowly Jackson has been putting on weight (it's incredible to think about now but he was a mere 18 lbs at 3 years of age). He's been happier. He's been able to move a touch better than before. And he's been sleeping for 8-12-14 hour blocks for the first time in more than a year where before he never slept more than 3 hours at a clip.

We cannot know for sure if Nystatin is going to be the silver bullet that gets Jackson back to 100% health. Dr. Truss is 90% sure that this is the cause of Jackson's 18 month illness. And he's the world's leading expert on understanding fungal infections and how they manifest, having studied and experimented with fungal infections since the 1970s. And that Jackson will make a full recovery. Man, 90%. That's a huge percentage!

We've been understandably cautious, as this 18 month Bhutan death march has had its up and downs (mostly downs really). But a few weeks ago Dr. Truss told me a story about a 21 year old woman that came to him a year ago in a wheelchair. Seemingly healthy and normal at 18 years old, she spent 2 years losing her health and ability to move. Alternately diagnosed with multiple sclerosis, chronic fatigue syndrome, fibromyalgia, and a host of autoimmune diseases, she finally ended up in Dr. Truss's office last year, weak, partially paralyzed and confined to a wheelchair, and at the end of her wits.

After a year long course of Nystatin, she's gotten back her health and is up and about.

It's early, and I don't want to count any un-hatched chickens. But I'll take that 90%. With a huge smile. And with many, many thanks to the Minyanville community for the ceaseless good thoughts and prayers.

Enjoy your weekend. And know we're going to enjoy the hell out of ours....
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